Astronaut Flight Suit & Prednisone For Atoimmune Autonomic Neuropathy???

[jenglynn]

I posted a few weeks back that I was "terminated" from work.... Well originally they told me they'd keep on our Health Plan for 6 months- that was very generous I thought- but because my employer ( the insurance Health plan is also the same as the hospital it can get tricky). We've had 3 different serious medical errors and they have been afraid of a lawsuit (which I've never threatened... I can't imagine suing them - especially as my employer)- long story short I didn't get the extra 6 months of coverage in writing and I just got our COCCs which give a term date of 3/31/12. So, verbally, they lied but no way to prove it. I don't even know why???? I wasn't even expecting t nor did I ask. They just offered. I called HR to make sure and they verified that the 6 mo was a mistake and the 3/31 dates are correct. Ugh.

This has created a huge mess. Now I'm on some kind of assistance through the county. I was supposed to have my follow up with Mayo today. Now I can't see Mayo anymore- who is handling all of my neurological care. So I can send in pre-auths but it will take at least 1-4 months. I need about 8 tests before I can go to Mayo. The plan was to go today- get all of those done- and see neurology today and they would have 5 options for treatment. My new Medicaid basically insurance will not pay for any tests out of state. 3 can be done locally, 2 in Madison, and 3 in Milwaukee. I could just cry. The first time was hard enough- now I'm even more sick, more frustrated , and just ready to give up.

I had to see a local neuro who has some "knowledge" I guess but the two treatment options for now he offered was having me wear a Flight Suit- like astronauts wear????? Has anyone heard if this? I guess you put it on and just keep pumping pressure in it. Of course my husband thought this was so cool... But I'm thinking.... OMG... I hate being sick- but I don't know about wearing an astronaut suit for the rest of my life?!?!?!?!? Has anyone else tried this? I totally thought he was kidding! I'm sure the Medicaid wouldn't pay for it anyway...

On to the Predisone- he suggested this for my autoimmune disease and autonomic neuropathy. I don't ever recall hearing anything good about this. Is it used for these purposes? I was always thinking respiratory and allergies. I've heard side effects are awful and it can make you act crazy??? Any experience or advice on this?????

Oh, and this plan I'm on doesn't cover 4 of my drugs that I need- Midodrine being one. It is very expensive! I can't even sit up without it. I'm so discouraged and I guess angry. So I have NO idea what to do. Monday I will start calling for help. In many ways THIS hospital who fired me is responsible for how sick I am now because of extreme errors, mis-read test results, UN-read test results (wore a Holter in April- no one even opened it until end of Aug. every day more than 20 inappropriate sinis tachy) there is a lot more but I just want to get well. Will these 2 things help???

If it isn't one thing- it is something new. Kidneys are not in failure but close to it- just not working right. I'm wondering if this is from the IVIG rejection??? AGH.

Any info about the space suit (OMG, I can't believe I'm even asking about it lol) or Predisone- I'd love to hear!!!!!

Jen

[issie]

Yes, I have heard of it and there is a girl who has posted on the net about it helping her. It will help to keep your pressure up and maybe help prevent so many faints.

And for autoimmune things they are trying predisone for some with those issues. I took it myself a few months ago. It helped - but, only temporarily for me. There are others who are on it now and I hope they will chim in as to their experience. I'm hoping to have more autoimmune testing done and have a call into my Mayo doc right this minute in regard to it.

Jen, hang in there - you're a fighter - you can get this figured out. At least you have a doc giving you some other ideas and options. The suit shouldn't hurt anything - whether or not you can get it paid for - would have to be figured out. I've heard both good and bad about the predisone. - so you'll have to weigh that out - and do the research on it - before trying anything else.

Hope things start to settle out better for you. You weren't sure you even wanted to go back to Mayo as it was. Now, you're getting other opinions.

Issie

[Maiysa]

Jen, I'm really sorry to hear your story. I feel awful for you as this is a terrible chain of events. One thing that helped me with my son's medication that was costing $2,300 a month and the insurance company only paid half. Yikes. So I called the makers of the drug and they were wonderful about helping us lowering the cost. He is in college so was eligible for some assistance with paying his deductible. Maybe that would be worth a try. I wish I could help you with your employer, but I wonder if you can call the unemployment office to get some help and see what they can do. I'm not sure how the legality works with firing people who are ill. It's really unbelievable and terrible timing. I hope you can file for disability right away. If there is a financial hardship they can help you more quickly. I have been doing the regular filing since 2008 and still nothing. But everyone's state is different and so are our situations.

My doctor was going to put me on steroids just to get the inflammation down, but due to fungal lung infection I can never take steroids. Also about the suit, I think there is a woman who has a facebook page and is listed under "God Still Needs Me" Living with Dysatuonomia. Anyhow, I think she also used this suit. I thought there was something in the book about it. I also know she was using something with ice packs in it too, to keep the blood vessels constricted to keep her blood pressure up. I'm probably no help. I wish I could fix all of this for you. Ugh.. But am sending you good prayers and health!!

Maiysa

[jenglynn]

Thanks Ladies!!! I "guess" I'm willing to try the suit but I'd NEVER heard of it. It just seems a little... I don't know... Much??? Do you wear it all the time??? I guess after this long and being this sick - anything is worth a try. I looked up Predisone online and it seems as if people loved it or hated it- or it did work but the side effects were really hard to live with. I'm taking my first dose today. We shall see!!!!! I'm nervous about it. I saw one very rare side effect bring "extreme sense of euphoria, well being and happiness" I am praying for that one!!!

I am a strong person and survivor. I've been through so many things... But I find myself getting to that point where I'm running out of positive energy and feeling more discouraged, defeated and pessimistic. THAT is NOT ME!!!! So I'm re- focusing energies starting today, counting blessings, and taking comfort in the fact that I'm seeing a new doctor who wants to help, so many people who surround me with love, and a family who supports me unconditionally. I AM one of the blessed ones!

Jen